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4 months ago
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I’d be willing to bet that most of the U.S. population above the age of 35 has at least heard of the Human Genome Project. They might not be able to tell you much about the specifics of what it was, but they probably know that it was important (though they probably couldn’t articulate why) and that the goal was to sequence the human genome (whatever that is). After all, it was one of the top science, technology, and medicine stories of the 1990s and early 2000s; at the time, the press often compared it to the 1969 Apollo moon landing.
A smaller number of people would be able to talk a bit more about what a genome is — the seemingly endless string of letters (A’s, C’s, T’s, and G’s) that is essentially the assembly instructions for the human body. They might remember a few of the big names involved, like Francis Collins, James Watson, or Ari Patrinos. An even smaller number of people could tell you how long it took (13 years) and how much it cost ($3 billion of U.S. taxpayer money) and that the National Institutes of Health and the Department of Energy were the primary funding/organizing organizations.
However, I doubt that most could talk to you about some of the other important, lesser known, stories from the Human Genome Project. For example, did you know that there was an anti-Human Genome Project letter writing campaign in 1990 — as the project was about to begin — which was signed onto by some of the most important scientists in the U.S., including Nobel laureate and biochemist Christian Anfinsen and Mary Sue Coleman, former president of the University of Michigan?
Or what about records of internal discussions that led to the establishment of the “Bermuda Principles” — the 1996 landmark agreement among the leaders of the HGP to make all the genomic data they were generating free and open to the public as soon as it was available?
Or what about the ethically questionable actions taken by the Roswell Park Cancer Institute’s institutional review board and National Human Genome Research Institute (NHGRI) leadership when recruiting volunteers to donate their DNA to participate in the HGP, as reported by Undark in 2024?
Well, if very recent events at the NIH are any indication, soon practically no one will know or even be able to find these stories.
That’s because the archival records detailing much of these events are under threat due to efforts by the Trump administration.
I was the archivist at the National Human Genome Research Institute, which is one of the 27 agencies comprising the NIH. I was one of more than 1,000 full-time employees and contractors laid off as a part of ongoing consolidations of huge parts of the NIH implemented by HHS Secretary Robert F. Kennedy Jr. My job was to preserve and provide access to the records of the Human Genome Project, for which NHGRI was created in 1988 to lead at the NIH.
Since 2012, my colleagues and I have managed a digital archive containing these records. We’ve made them available to a countless number of scholars, students, journalists, and scientifically curious members of the general public. We’ve scanned and cataloged more than a half-million pages of paper materials and countless other born-digital and multimedia materials from the HGP. These include materials from the key early planning meetings; information about the development of the first automated sequencing technologies spurred by the HGP; congressional testimony from project leaders justifying the project’s price tag; the earliest sequencing grants, which led to, among other things, the C. elegans genome sequence (the first animal to be completely sequenced); records from the establishment of the Ethical, Legal, and Social Implications (ELSI) program; videos and photographs of the researchers and their labs; and so much more.
All of that work, like so much else at NIH, is currently being dismantled. If you go to the NHGRI website, Genome.gov, you will notice a banner at the top of the page reading “Due to reduction in workforce efforts, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries. Note: Securing and protecting this website will continue.”
In effect, this means that the digital archival records my colleagues and I maintained are currently inaccessible. I worry that they might be gone altogether, either now or sometime in the future. Increasingly, my former colleagues and I are concerned that ongoing data calls across NIH — in which staff are asked how much traffic certain websites and databases get, how much storage they require, etc. — will result in the wholesale deletion of large swaths of data from the communications offices, which is where the NHGRI archive, among others, resides. Or, should I say, resided?
To make things worse, numerous scholars were actively using our materials for research just as staff were being terminated. The fate of much of that research is now in doubt. I’ve since been locked out of my NIH workstation, so I have no way of knowing what will happen to all of this data.
This should be alarming not just for the scientific community but for the wider public. NIH and HHS leadership seems to have little regard to or awareness of the damage being done by the wholesale elimination of entire communications offices across campus. It’s certainly not just limited to the HGP archive at NHGRI. Before my colleagues in the NHGRI communications office were terminated, we were in the process of developing new plain-language educational resources for the American public on complicated but important topics like genomic medicine, newborn sequencing, and prenatal screening. We were set to debut an oral history interview with NASA astronaut Kate Rubins, who is the first person ever to do genomic sequencing in space. Now none of that work will ever see the light of day. There are undoubtedly countless other examples from the other institutes and centers across NIH.
As time goes by and genomics becomes ever more embedded within the everyday health care of the American people, it will become increasingly important to understand how we got here, especially if we want to ask the important questions about where we might be going. For example, it’s now cheaper than ever to sequence a whole human genome. Does that mean we should be sequencing more people? What about every newborn in the U.S.? Could that lead to a new era of eugenic thinking? The history of the Human Genome Project and the multitude of stories contained within the NHGRI archive can and has provided much insight into answering these questions.
On a more macro level, the Human Genome Project is an example of the kind of story that we as Americans tell ourselves when we want to remember what made us great: It was a highly complex, discovery-driven, monumentally ambitious (and risky) project whose goal was not entirely clear at the time that was driven by a desire to know more about this world and beyond — much like the moon landing and current efforts being led by Elon Musk to try to reach Mars. We look to the past for examples of that kind of story as precedent for pursuing similarly ambitious projects in the here and now. I fear that soon we will not only lose these invaluable records of the past but also our drive to pursue, as a nation, the bold and innovative moonshot projects of the future.
Update: After publication of this essay, the Office of NIH History, which is situated in the Office of the Director at the NIH, reached out to the author to discuss preserving the archives.
Zachary Utz, M.A., is a science communicator, public historian, and archivist, formerly at the National Human Genome Research Institute.
